Wednesday, October 5, 2016

More grace and a chew toy.

Come, thou Fount of every blessing,  tune my heart to sing thy grace;
streams of mercy, never ceasing,  call for songs of loudest praise.
Teach me some melodious sonnet,  sung by flaming tongues above.
Praise the mount! I'm fixed upon it, mount of thy redeeming love. 

The other day, I found myself slumped over my bed crying my eyes out over a chew toy.

Yes, a chew toy.

Not for a pet we own, but for our little doodlebug.

As I opened the link on my phone to place the order to purchase it, I broke. The past few months we've endured came flooding in with tears and waves of deep emotion.

Isaac is doing wonderful physically.
A recent visit to the cardiologist revealed that his heart is completely healthy.
A recent visit and scope with the gastroenterologist revealed that his esophagus is now completely open.
A recent visit with the allergist revealed that he has no allergies to foods, just intolerances.
These are all huge hurdles that Isaac has been able to cross.
We give God the glory for this!! He has never taken His hand off of Isaac.

Those issues are but a memory to us now.

But, Isaac still has daily struggles.

Several months back, Isaac began sticking toys and random items down his throat to induce vomiting. He did this for some time last year, but then we found out that his tonsils and adenoids were terribly swollen with scar tissue and needed to be removed. That issue was resolved with surgery and it seemed as if we were out of the woods with just about every issue he was having.

So we thought.

Those issues just seemed to mask or take precedence over something that was going on that none of us really expected was still there.

Isaac's oral sensory issues were coming into full swing.

Isaac has Sensory Processing Disorder. He was diagnosed at just 11 months old.

There are several sensory areas that are affected.  Isaac's biggest sensory area is his oral sensory.

He has what is referred to as hyposensitive oral sensory.

This means that he has low oral tone and very little awareness of what's going on inside his mouth. It is also referred to as oral numbness. For this reason, Isaac craves oral sensory input. This is why he was sticking things in his mouth.  He is constantly on the search for something that will create a sensation in his mouth (oral stimulation), rather that be eating food or something that can actually harm him.   To him, there isn't any difference between the two. They both give him (his body) the same signal.

Stay with me. I'll try to explain...

Touch receptors (cells that give your brain information about the world around you through touch) are located all around the body. The mouth, lips and fingers are considered to have the most concentration of touch receptor cells in the body.  More brain power is spent interpreting touch sensations from the mouth, lips, and fingers than from other areas of the body that have touch receptor cells.

Touch helps us to experience hot, cold, pain, pleasure or pressure. Touch is an important sense because without it we would not recognize pain or pressure, which in return could put us at great risk. Touch processing is very closely linked to emotional development which can also affect healing and the reduction of anxiety and tension.

Isaac's oral development was slowed down due to the compression of the heart artery up against his esophagus.  He endured oral dysphagia (weakness in the oral muscles) for so long that he did not get to discover the world around him with the normal oral sensory input, his oral touch receptors. Now, his body is desperately trying to catch up. We recently found out that his tongue and cheeks are both still not experiencing normal mobility as they should be for his age.

Along with sticking things in his mouth and constantly feeling the need to eat or snack, he over stuffs his mouth with food looking for oral sensation, which can be very dangerous - due to the fact that he doesn't chew his food properly because of the immobility of his tongue-which is used to help chew.

You still with me? I do have a point I'm getting at.

We all have sensory receptors. They are connected to the five sensory areas. Our sensory receptors give signals to our brains. Our brains then tell us how to react to a certain signal with an emotional response; pleasure, surprise, disgust, pain, fear, etc. When Isaac's sensory receptor sends a signal to his brain, the message is confused and gets all jumbled up, creating a sort of traffic jam in his brain, so that the wrong response is sent from his brain to his sensory receptor.

This jumbling causes Isaac to be in constant fight or flight mode. It creates anxiety and disorganized feelings. It creates a feeling inside of him that is uncontrollable at times. He has meltdowns, he screams, he hits himself and thrashes around, trying to find peace within himself.  And he chews on everything he can fit inside of his mouth. Like an infant, he discovers everything though his mouth.  Strange as it may sound, as Isaac creates oral stimulation for himself, it helps to calm him and reorganize everything in his brain. Isaac has a lot of anxiety. A lot. Not only does he have the physical aspect of oral sensory going on, but he is also dealing with PTSD from all of the illnesses he has endured since he was born.  He has a fear that he will become sick and suffer the same things he has over and over again. We believe that this is what is creating his lack of sleep. His worst moments were always at night. He had severe obstructive sleep apnea for over 18 months. This creates anxiety for him at night, so he awakes feeling anxious and scared. This creates the need for oral stimulation. He will drink periodically throughout the night looking for that calming oral stimulation. It's a never ending cycle.

This is where the chew toy comes into play. Isaac can now chew on a special necklace designed for sensory needs, instead of wanting to eat constantly or stuff a straw down his throat or chew on a rubber tire that he has bit off a hot wheels car. Yes, he's done that and more. Chewing on the necklace will help give him the oral sensory input that he is looking for.

Isaac has recently begun going back to speech, occupational and physical therapy. We are also looking into reflex integration therapy that can help him with his PTSD. I've recently discovered essential oils that have helped to calm him and give him a better nights sleep. Not a perfect night's sleep, but much better.  He goes to therapy three times a week to work on these areas. It's been hard for him, but it's been good for him. He looks forward to going to his "class" and playing with his "teachers".  And it has been good for me. So very good for me. When I walk into the therapist's office, there are no judgmental eyes glaring. There are only other mothers who understand. Mothers who see. They get it. They look with eyes of compassion. There aren't tons of questions or looks of doubt or concern for my, at times, unruly child. They don't cringe when they hear him scream because they hear the same screams.  There's just talking, sharing, listening and tons of grace. Oh, the grace that comes from these mommas. There is such beauty in communing with them. It has been good for my heart and healing  for my spirit. It has been an answer to prayer for me. I have felt so alone at times, not wanting to share everything with others. Even my family and closest friends who have walked through this journey closely with me, do not know it all.  God truly listens. He saw what my heart needed and met that need.  There is no lack with Jesus!

Isaac also has three of the most gentle, kind and patient therapists! They work together to decide what tools and techniques work best for Isaac. We are so blessed to have them teaming up to help Isaac live a happier life while dealing with these disabilities.


As I type that, my eyes fill up with tears.  It has taken me a long time to deal with the fact that Isaac is considered a special needs child. I don't know why. Maybe it's a heart issue that I need to work on, or maybe it's just the desperation for me as a mother to want my sweet boy to be well.  To finally be well.'s been a long three years. All the doctors and diagnoses and hospital stays and procedures and surgeries and medications and long nights. It's been a lot. It's been hard. It took me a long time to be able to admit that as well, that it's been hard. I had to give myself permission to say it and realize that saying it isn't a sign of weakness on my part. It's an indication that I need my Savior. I need Him to be the strength that I, on many occasions, can not muster on my own. I need Him every day and every moment. I simply need Him.

The fact is, it's still hard. That doesn't mean that I don't have faith or that I am claiming something that doesn't need to be said. It's stating the facts. It's still hard. And without letting those words cross my lips, God knows my heart. He sees the weariness and the heaviness and He is close to me.

Don't get me wrong here. We have plenty of wonderful days. Isaac is a sweet and lovable boy. We enjoy being his parents. We relish in all the good and the bad.
 God sees those moments too.

God also sees the joy. He rejoices in my worship over Him for all that He has done in Isaac's life. Every day has been a gift. Each and every day.  He hears the laughter and the giggles we have with Isaac. He knows we are humbled to have been chosen as Isaac's forever family.  He sees the love we have for this precious boy. He knows, that even on the hardest days, that we are thankful. He knows that our trust lies only in Him.

Here I raise mine Ebenezer;  hither by thy help I'm come;
and I hope, by thy good pleasure, safely to arrive at home.
Jesus sought me when a stranger,  wandering from the fold of God;
he, to rescue me from danger,  interposed his precious blood. 

I contemplated several days before writing this blog post. It's hard to put to words sometime how all of this plays out in our lives. Not to mention, it all occurring while Isaac is also being a vibrant, stubborn, and strong willed 3 year old at the same time. Ehemm. Need I say more?

As I sat beside my bed holding my phone opening the link to order the chew toy, with what I felt as the weight of the world on my shoulders, I asked myself, "Why is this upsetting me so much? Why am I letting this get to me like this?"

The answer was a little embarrassing. I was worried about what other people might think.
What will they think when they see him chewing on a necklace that's actually a chew toy? What kinds of questions will come from this?

Foolish, right? Yeah, I know.

We get the looks and the stares because of Isaac's behavior in public. Normally, those looks and stares don't have much effect on me. I chock it up as people just not having enough information and forming their own opinion. It's been a battle I've chosen not to confront on many occasions. Something about this chew toy issue just caused me to get all stirred up inside. Emotions came up from everywhere.  For the most part, Isaac is good, but social interaction isn't always his best suit. It creates an anxiety inside him, even though he is excited to be wherever we are. The parties and get togethers become difficult when he screams blood curdling screams just because he has stubbed his toe on an outside toy. His screams are glass shattering. They are his natural response to anything, good or bad.  Yes, he has come such a long way from where he once was. I definitely see huge changes in him. But, not everyone sees. Not everyone knows the treacherous roads this little guy has traveled and survived. Not everyone knows the source behind those screams.  Not everyone knows what Isaac deals with on a daily basis.

The thing is, not all disabilities have a face. On the outside, Isaac looks like a perfectly healthy 3 year old. There are no physical attributes that tell you he has SPD. To others, he just looks like a perfectly misbehaved 3 year old. People make remarks or they just shoot a look our way. They  look with disapproving eyes at the way I discipline him or don't discipline him when he screams and thrashes. They snicker things like, "If he were my child, I'd spank him good."  Unfortunately, you can't spank a disability off of a child anymore than you can rub cancer off of someone. It's not a problem that needs to be solved.  It's just a small part of what makes him who he is.  He's not "broken" and doesn't need "fixing". He's a person who just so happens to have needs that are different. Needs that make him special.  Needs that make him human like the rest of us.

A few hours after I sat on the bed crying and feeling sorry for myself that I had to order Isaac the chew toy, I went riding to Lowe's with my husband. The tears ran down my cheeks as I thought about it. My husband inquired about what was bothering me, so I filled him in on everything and how I felt about it.

His response?

"Who cares what people think?! God gave Isaac to us and our opinion of him is the only thing that matters. If more people's opinion mattered, God would have called a board meeting on Isaac's behalf. But He called us to this. He just called us.  God knew that you would be the right mom for him and he knew that I'd be the right dad for him.  Nobody else's opinion matters to God. So what if he wears a chew toy around his neck? Maybe if more people chewed on chew toys, they'd be less cranky, less stressed out and less rude. Maybe we all need more grace and a chew toy!"

I giggled loudly. He was right. He was so right!

Maybe we all need more grace and a chew toy.

More grace and a chew toy.

O to grace how great a debtor daily I'm constrained to be!
Let thy goodness, like a fetter,  bind my wandering heart to thee.
Prone to wander, Lord, I feel it,  prone to leave the God I love;
here's my heart, O take and seal it,  seal it for thy courts above

Maybe I need to give myself a little more grace. To give our life with Isaac a little more grace. To give others - who just don't have a clue about any of it - a little more grace.

Colossians 3:12
"Put on then, as God's chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness and patience,"

That weight that I was feeling, was the opinion of others. That weight is not something that I was ever meant to carry. The opinions of others had become a burden that was weighing me down into the dirt of despair. It was taking away from what the Truth was in our lives. The Truth is that Isaac is healed and whole. This precious boy has looked death in its eyes several times in his short life and has lived to experience joy, laughter and so much love. He has come further than many of us have in an entire lifetime. His disability doesn't take away from that. That's the Truth.
The enemy of my soul was trying to convince me otherwise. I am thankful for a husband who speaks God's wisdom when I need to hear it. I praise God for putting me in check and delivering me from the lies circling around in my head. I'm so thankful for a God who doesn't allow me to fade too far away and urges me back to His heart.

"Every time God delivers us, the point is ultimately to draw us closer to Himself.  Whether we get to avoid the pain and suffering or we must persevere in the midst of it, our deliverance comes when we're dragged from the enemy of our souls to the heart of God."  - Beth Moore

The opinions or misconceptions of others, should never take precedent over Truth in our lives.

God offers Truth where the world, the enemy, will offer fear and doubt.

I had allowed what the world thought of Isaac to have more value than what we or God thought of Isaac.

God sees Isaac as whole. Lacking nothing.
He sees Him as already healed in every area.
He sees him as belonging solely to Him.
He sees his issues as not a disability but a characteristic of His child.
If anyone wants Him healed and whole and free of struggle, it's God.
And yet, He loves Isaac just the same.
Because He already sees Isaac healed and whole.
He just sees Isaac. His Isaac.

So what if Isaac needs to wear a chew toy around his neck. Sure it's strange and different. But if it helps him be a better, happier, and healthier him, isn't that what matters most?

Maybe we all just need more grace and a chew toy.

Just maybe.

Oh, Jesus, tune my heart to sing Thy grace.

Colossians 4:6
 Let your speech always be gracious, seasoned with salt, so that you may know how you ought to answer each person.

October is Sensory Processing Disorder Awareness Month!
Celebrate the SPD children in your life!

We ALL need to be celebrated!

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